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An update on the disease

My latest scan shows that the once, tiny tumours in my lungs have grown in size and that new tumours appear in lymph nodes in my chest. There’s also a large tumour in my stomach.

Before this, I had known only about a few small tumours in my lungs, in addition to the ones we knew about from the beginning — the ones in my pancreas, liver, and nearby lymph nodes. The disease had largely been confined to a certain section of my body, a part I would point to and call the “belly”. The metaphor of cancer as a kind of invasion had not yet felt accurate. But things have changed, and the word seems apt. I am being invaded. I am losing control of my body to something else, to something uninvited, and at some point there will be no more me.

Each treatment I have been on has been less effective than the one before it. I was first on FOLFIRINOX, a chemotherapy that left me fatigued for days or weeks, making me nauseous, thinning my hair, and causing neuropathy. But it was effective for eight months. Then I was on Afatinib, an experimental drug with very tolerable side effects. But it only worked worked for four months. The third and most recent drug I’ve tried, T-DM1 (or Kadcyla), left me with debilitating headaches for days. And it may or may not have triggered two incidents of vomiting blood. But T-DM1 only worked for a few weeks. And so I will start Gemcitabine soon, an old drug, one that was once standard for pancreatic cancer.

When I was diagnosed sixteen months ago, my oncologist told me that the average life expectancy was ten months. In those sixteen months, over 60 million people in the world have died. Many of them have died to due to old age. Many to disease, many to war, many to poverty. When we think of it in in the abstract, as a thing that happens on the order of millions or more, it’s hard to fathom. It is hard to understand that each of these people were living, breathing human beings, with their own stories and goals and dreams. You can try to imagine sixty million pairs of hands reaching out, working, making the stuff of life. But we can’t really imagine what “sixty million” looks like. We can’t even imagine a million. In fact, when we form a picture of sixty million people, it doesn’t look that different from our picture of just one million. But the first is sixty times greater than the second. And that’s a conservative estimate of how many people died in the last sixteen months.

I have often said that it was just a matter of chance, of bad luck, that I got sick. There was nothing I did that lead me to this situation — nothing I did to deserve this cancer. This is not because I am such a good person or because I know all about who deserves what. Rather, I did not deserve this simply because nobody deserves this. And it has nothing to do with “deserve” anyway.

But likewise, the fact that I have lived as long as I have with this disease, 60% longer than average, was also a matter of luck. It was just chance, and an unlikely chance, that my cancer cells manifests a particular mutation for which particular drugs exist. I’ve done nothing to deserve this fortune either. I did not pray, I did not consume strange concoctions of alternative medicine. And I am most certainly not a man of indomitable strength or will. All I did was listen to the advice of my doctors and follow their instructions as best I could.

I wonder how long I have left, but this is hardly the first time I’ve wondered about that. I have tried, over and over again, to come to grips with the fact that I’m going to die. But it has gotten easier each time. When I try to come to terms with something, I often look into its crevices, and I try to examine all that it is and all that it entails. Every time I do this, the emotions it brings up become weaker. And I begin to feel a little bored with it – not so much that I reject it or ignore it. Rather, it becomes a boring fact like the weather, something to live with and to complain about only a little.

So I don’t know how much time I have left, how many more drugs I can try or how well they will work. These drugs were never meant to stop the disease or to kill it. It was only ever meant to slow it down.